Thursday, August 23, 2012

Colin's Fontan Surgerical Consult - Looking at Summer 2013

Yesterday
we had Colin's pre-surgical consult with his surgeon at Texas Children's
Hospital. A little back story to update all: In April we were told that Colin's
next (and hopefully last) surgery (Fontan) was going to be this summer. After
that appointment Colin had a heart cath in May and an echo in June to fully see
what was really going on inside his little body.

Yesterday's
appointment we were told that most likely Summer
2013 is our target date. We are pushing it back since Colin's heart looks
so well and his function is good. Colin is still on the smaller side, so they
want him to gain more pounds so they can use a bigger conduit (synthetic
tube graft used to direct blood flow) in his surgery. They could use a smaller
conduit now, but it does not grow with your body, so it is better for adulthood
to have the bigger one.

But if his heart function starts to decrease, oxygen
levels go down, or his leaky value starts to leak more, they will do the
surgery sooner and have the smaller conduit. So we will continue our 6 month
check-ups until they think he is either big enough or until he absolutely is in
need of it, whichever comes first. Yesterday
we were told that Matt & I could pretty much plan it, so if all stays the
same and he is doing so well, we think maybe late July 2013 when it gets too
hot to do anything anyways.

Here are some of our questions we got answered, some
might only make sense to the other heart parents following our blog, but I will
try to speak to each point for all to understand:

-Depending on how well Colin is doing, he might not need another cath before
next summer. They feel as long as it's within a year of the surgery (or close
to) they won't have to go in again. If they need more pictures, they can do an
echo and/or MRI

-Our hospital does the External
Conduit Fontan (there is another version of the surgery..Lateral Tunnel Fontan) which means the
operation is done by attaching a tube of a special plastic (a conduit of
Gore-Tex) from the lower body vein (Inferior Vena Cava) to the base of the lung
artery (Pulmonary Artery) diverting blue (deoxygenated) blood away from the
heart straight to the lungs.

-80% of
their fontan's do not receive fenestration.. it is only done on a case by case
basis. If Colin stays low risk he will not use fenestration – A fenestration is
a hole that is created between the tube and the right collecting chamber (Right
Atrium). As with the Internal Fontan there can be a rise in pressure in the
lung arteries after surgery and the hole acts as a pressure valve.

-Colin has
a mild leaky valve. They worked on it during his first surgery. It has not
changed since then, and they have been happy with that. As of right now, they
are on the fence about trying to repair it or not. It is a mild leak, so they
are going to do an echo in the operating room to make the call about it then.
There is of course more risk with working on his valve, as you could make it
worse. Also if they work on his valve, they will have to STOP his heart to work
on it. And the risk of stopping the heart is that you can get the rhythm out of
sync and might require a pacemaker to help with that.

-We
discussed possible complications: First is getting back in through his original
incision and scar tissue, there is a chance of puncturing a hole in the heart,
fluid can build up around the lungs (which will make your hospital stay
longer).And of course with all
surgeries, chance of seizures and stroke.

-This type of fontan was developed in the early 90's.. so most people are
only about 18-20 years old. There is still so much they don't know about the
future of having only half a functioning heart. What effects it has on the rest
of the body. The liver, intestines, and kidneys see higher pressures due to
this reroute of blood flow, so there is a chance later down the road to develop
problems with other organs. Some have gone into heart failure and have had a
heart transplant and some were not candidates and have passed away.

-Normal hospital stay is about one and half to two weeks, depending on the
fluid level.

-He will have drainage tubes around his lungs and heart. To help with
getting the fluid off, they are really going to restrict the fluids he takes
in, which I heard is really hard when your child is begging for water and you
have to tell him no, or only just a little sip.

-They try hard to get the breathing tube out before leaving the operating
room.

-We will expect to spend about 2-3 days in the ICU, then move down to the
regular floor. He will be able to move around and go to the play room with the
tubes still in.

-If Colin has developed fatty fluid around the lungs and is hard to get rid
of, we will be sent home on a low fat strict diet for 3-6 months.

Okay so my thoughts and feelings:

-Glad he is in great shape to wait and that they are so happy with his
function and how well he has progressed. I am so grateful that he is a
candidate for this surgery.

-Once again weight gain is going to be a major stress in our house; he needs
to gain about 3 more pounds by summer, which is not an easy task. He likes
food, he eats.. but it is a lot of begging and pleading and sneaking calories
in where I can. He has always been small and doesn't ever gain in huge amounts,
but we will keep pushing food and more food, and more food.

-The leaky valve scares me the most. I hate thinking they might have to work
on it. I am distraught over the idea of them having to STOP my sweet little boy
heart in that case. As a mother, I cannot even express the sadness I feel
knowing the complications to that while looking at my blue eyed, white hair
little man.

-We are still going to live as life with the blessing we know Colin is right
now doing well. We are going to soak up all we can out of life and each other,
because one day Colin might not be as strong, he might develop other health
issues, he might fly through these surgeries but at age 30, his heart might get
too tired of only functioning on half a heart, and it might just give out. We
will always live with the fear of the unknown.

-I have so much HOPE for my son in the future. He is strong. He is a
fighter. He is a superhero! He has done amazingly well thus far and has set the
bar high to keep it up and I fully believe in him he can.

So
it was a good appointment (expect they were running 3 hours behind) with lots
of positive talk about how well Colin is doing, it also brings it back down to
reality that he does have such a major heart defect. We have been so removed
from the world of surgeries (his last one was 3 years ago) that is surreal to
have to think about it again. But we now have about a year to live life to the
fullest, to enjoy more trips to the beach & river, more play dates, more
laughs and giggles, more bedtime stories, more snow cones & ice-cream, more
road trips, more family movie nights, more of each other, more of everything
really. However long my son is on this earth, whether it be 15 year or 80
years, time is not to be wasted. As one of my favorite quotes " Do not
squander time; for that's the stuff life is made of".

The photo collage that we gave Colin's surgeon.. he loved the peeing picture! We tried to capture the true love of life our son has and how active he is.

About Me

I have been married to by best friend for 10 years. We have two beautiful children. Katherine, Age 7, and Colin, Age 4. Colin was born with HLHS. He had his Norwood on April 13, 2009 and his Glenn on September 17, 2009. His Fontan is scheduled for July 16, 2013.
He is doing great and his big sister loves him so much.
We are a busy family, but that's why it great, we treasure everyday.